Ghost Boy Read online

  I understand why my parents want to see me walk and talk, but it’s exhausting to live in a body that feels like the property of everyone else. That’s why I told my mother yesterday that I wanted to have physio only once this week, and I’m hoping she’ll agree to this compromise.

  “Shall we make an appointment for Friday?” the physio asks as my chair comes to rest.

  I stare at my mother, willing her to remember what I said.

  “Yes,” she says, without looking at me.

  The anger I feel burns white hot through my veins. Tomorrow I will go to see my colleague Kitty and rage to her about what has just happened.

  “What’s the point of communicating if no one listens!” I’ll say. “Why is it that I talk yet people still refuse to hear what I say even after all these years?”

  For now, though, I wrestle back my rage to stop it from dragging everything else down with it. Because, as powerful as it is, the fear I feel about expressing my anger is even stronger. Anger is one of the emotions I still find almost impossible to show because I had to force myself to swallow my rage for so long. I don’t feel I can express it even now, trapped as I am by both the monotone of my computer-generated voice and the constant fear of alienating people. After spending so long as an outsider, I don’t want to do anything that might make me one again.

  As time passes, I realize that I feel afraid a lot now: I’m scared of doing the wrong thing, offending someone, or not doing a job well enough; I’m fearful of stepping on someone’s toes, not being up to what is asked of me or expressing an opinion that will surely be ridiculed. The feeling is almost constant, and it’s the reason why I don’t tell my mother what I really think six years after starting to communicate.

  There’s another world I inhabit, though. In that world I became one of the first two South Africans with non-functioning speech ever to graduate when I finished my university course and was chosen to meet President Thabo Mbeki. I’ve travelled to different countries, I’ve spoken to hundreds of people, and I’m respected by my colleagues. My prayers have been answered in more ways than I can count.

  Yet in my personal life, even though my family and friends are my lifeline, I remain in many ways a passive child who is wiped and wheeled, smiled at and sidelined at times, just as I’ve always been. My parents continue to care for me physically, protecting me from much of the outside world and the harms it might inflict, but I wish they’d listen to me more sometimes. With my sister Kim, I sometimes feel as if I’m a rehabilitation project rather than a brother when she brings home new pieces of equipment from the UK—anti-slip mats for the bathroom or plastic borders to stop food falling off my plate. To others, I’m an occasional charity project, someone who needs to be fixed, or the silent man who sits smiling placidly in a corner. Taken together it makes me feel as if I have no right to life, as if I must always ask permission for fear of doing the wrong thing. The past continues to cast its shadow over me.

  I long to rebel, but I don’t know how. Once I had petty, hidden ways at my disposal and can remember the grim satisfaction that filled me years ago when I watched my leg callipers gouge the paintwork on my mother’s car. I was wearing them after a particularly painful operation, so I was pleased by my accidental act of rebellion as Mum helped me out of the car.

  Today I can’t justify such bad behavior, nor can I lay all the blame for my frustration at other people’s doors. Even a lion cub won’t leave its mother if it’s too afraid. I know independence is taken as much as it’s given, and I must learn to claim mine, but sometimes I wonder if I will ever find the courage to do so. It’s 2007, and earlier this year, I finally left my job at the communication center and started working full time at the scientific research institute. It’s an excellent promotion—the kind of professional good fortune that many people like me never get the chance to experience.

  As everyone at my new workplace is encouraged to study, I applied to do a part-time degree at a university but was told that I had to graduate from high school first. No one would listen, however patiently I tried to explain, that I’d just graduated from another university course as one of the top of the class. The mountain I’d climbed to achieve my qualification meant nothing now that I was applying somewhere different with its own set of rules.

  So now I’m studying each night when I get back from work for a high school diploma that sixteen year olds do, and I question if there’s any point in trying to move forward in life when the weight of everything holding me back feels too heavy to bear at times. As I consider it all, I wonder if soon I’ll feel too afraid, too disbelieving that I have earned a place in life to be able to fight for one any more.

  Martin in swimming pool

  Mom and Dad with Martin at graduation—2006

  Kojak and Martin training

  Martin presenting at international conference in Israel

  Martin and former South African president Thabo Mbeki

  Martin and Dad at International Conference in Israel

  43 STRANGERS

  It was only when I finally gave up on life that I realized we don’t need ropes and chains to keep us tethered to this world—even the most insignificant acts can keep us bound to it.

  It was 1998, and I was twenty-two years old. I’d started to become aware six long years before and was convinced by then that no one would ever know I was whole inside. After so many years of hoping in vain that I might be rescued, the thought of never escaping the crushing monotony of my existence had made me shut down inside. I just wanted my life to end and nearly got my wish when I became seriously ill with pneumonia.

  Finding out that I would have to go to the care home in the country that I hated so much was what made me finally give up. I can remember my parents taking us all to see some friends of theirs. As my mother fed me lunch, I knew there was nothing I could do to show anyone that I didn’t want to be sent away again. My family had no idea how desperate I felt inside as they chatted and laughed around me.

  The following week I got a runny nose that quickly got worse. People soon realized it wasn’t just a cold when my temperature rose and I started vomiting. In fact, I became so ill that my parents took me to the emergency department at the local hospital, where a doctor gave me some medication before sending me home again. When I got worse again, my mother took me back to the hospital and demanded that someone take an X-ray of my chest. They then discovered that I had pneumonia.

  I didn’t care whether I was treated or not. All I could think about was being sent away when Dad went on his upcoming business trip. I knew I couldn’t bear it again. As my kidneys and liver started to shut down, I could hear my parents talking worriedly as they sat beside me, and I dipped in and out of consciousness. I knew I was in a room with other patients, and sometimes I could hear nurses rushing in to see them when an alarm went off.

  Sadness created a chasm inside me. I was tired of living. I didn’t want to fight any more. As a mask was slipped over my face so that I could be given oxygen, I prayed for it to be taken off; when a physiotherapist came to pound my ribcage and clear my chest, I hoped she wouldn’t be able to; and as she tried feeding a tube down my unwilling throat to relieve the congestion in my chest, I wished she’d leave me alone.

  “I’ve got to get this into you,” she said to me almost angrily. “You’ll die if I don’t.”

  I rejoiced when I heard those words. I prayed that the infection would overwhelm me and free me from purgatory as it battled for control of my body. I could hear my parents talking about the information file beside my bed that Dad always read whenever he arrived. Kim came to see me too, and the sound of the clogs she was wearing echoed through the corridor outside my room, while the brightness of her smile as she looked at me almost cut through the darkness. But nothing reached me, and I listened without hearing to nurses complaining about their working conditions or the dates they’d been on with their boyfriends.

  “I had a good look at him when he walked into the cinema in front
of me,” one said to another as they washed me. “He’s got such a sexy bum.”

  “You’ve got a one-track mind,” her friend admonished with a giggle.

  It was as if I was being sucked deeper and deeper down a rabbit hole. I urged my body to give up. I wasn’t needed in this world by anyone, and no one would notice if I disappeared. I wasn’t interested in the future because all I wanted was to die. So hope was like a breath of fresh air blowing through a tomb when it came.

  I was lying in bed one afternoon when I heard someone talking to a nurse. Then a face appeared, and I realized that it was a woman I knew a little called Myra. She worked in the office where my father got checks signed in his role as chairman of the management committee for my care center. But now Myra had come to see me, and I didn’t understand why because only my family ever visited.

  “How are you, Martin?” Myra said as she bent over me. “I wanted to come and see you because I’ve heard how ill you’ve been. You poor boy. I hope they’re looking after you well here.”

  Myra’s face was anxious as she looked down at me. As she smiled hesitantly, I suddenly realized that another human being, unconnected to me by blood or obligation, had thought about me. However much I didn’t want it to, that realization gave me strength. Almost unconsciously after that I began to notice warmth from other people: a nursing sister I overheard telling another that she liked me because I was a good patient, a caregiver who soothed my aching skin by rubbing lotion into my shoulder to stop me developing a bedsore, and a man who smiled as he walked by while I was sitting in the car on the day I left hospital. All these incidents didn’t come together at once, but looking back, I know these tiny gestures from strangers were what started to tether me to the world again.

  I was finally roped to it by something that occurred when I got back to my care home. Despite all that had happened to convince me I had a place in the world, disappointment pervaded: I hadn’t even been able to die properly. Breath filled my body, I woke up in the morning and fell asleep at night, I was fed food to build up my strength and put out to sit in the sunshine like a plant that needed tending. There was nothing I could do to stop people from keeping me alive.

  But as I lay on a bean-bag one day, a caregiver sat down beside me. She was new so I didn’t really know her, but I recognized her voice as she spoke to me. Her hands took hold of one of my feet as she started to massage it, and I felt her pummel my aching and ugly foot with her hands, soothing out the knots and relaxing away the tension. I couldn’t believe that she wanted to touch me, and the fact that she did made me realize that maybe there was some tiny reason not to give up on life completely. Perhaps I wasn’t as repulsive as I believed I was.

  Then I heard the familiar crunch of the zipped pencil bag the woman always carried around with her, which was full of the oils she used for aromatherapy. “There, now,” she said softly as the smell of mint pierced the air. “I’m sure that feels much better, doesn’t it? Why don’t we do your other foot and see if we can relax that a bit too?”

  The woman’s name, of course, was Virna, and it was the first time she’d really spoken to me. But that moment was the one that drew all the other pieces together and made the jigsaw whole. I didn’t know what each of those strangers had given me until one of them touched my broken, twisted, useless body and made me realize that I wasn’t completely abhorrent. And it was then that I realized that families might be the ones who pick us up time and again but strangers can also rescue us—even if they don’t know they’re doing so.

  44 EVERYTHING CHANGES

  I know a life can be destroyed in an instant: a car spins out of control on a busy road, a doctor sits down to break bad news, or a love letter is discovered hidden in a place where its owner thought it never would be found. All these things can shatter a world in just a few moments. But is it possible for the opposite to happen—for a life to be created in a moment instead of destroyed? For a man to see a face and know it belongs to the woman he will spend the rest of his life with?

  She is the kind of woman who would make any man’s heart sing, and yet I feel sure there is something about her that speaks to me alone. I met her on New Year’s Day a month ago when Kim called from England. I didn’t pay much attention at first as my parents chatted to my sister via webcam, and I heard her introducing them to the friends she was spending the day with. But then I turned my head, saw a woman with blue eyes, blonde hair, and the warmest smile I’d ever seen, and my world shifted forever.

  She was sitting between Kim and a third woman with dark brown hair. They giggled together as their faces squeezed onto the screen.

  “This is Danielle,” Kim said, gesturing to the dark-haired woman. “And this is Joanna.”

  “Hi Martin,” they said in unison.

  I could hear immediately that they were both South African. She smiled. I smiled back.

  “Ooh!” said Danielle. “He’s handsome.”

  My face burned crimson as the three of them laughed together before Kim got up to go and do something, and I was left alone with Joanna and Danielle.

  “Show us your arms!” Danielle said. “I’m an occupational therapist, so I know guys like you usually have great arms!”

  I felt my face burn even redder as I looked at them. I wasn’t sure what to say.

  “How are you both?” I wrote.

  “Good!” Danielle said. “What are you doing today?”

  “Working, like every other day. How was your New Year’s Eve?”

  “Fun. We went into London. It was great.”

  Joanna was quieter than Danielle, but I watched her eyes slide downwards whenever I wrote something. She was listening to every word I said. I wanted to hear her speak.

  “So how do you know my sister, Joanna?” I asked.

  “We work together,” she said. “I’m a social worker like Kim.”

  “How long have you been in the UK?”

  “Seven years.”

  “And do you like it?”

  “Yes. I work too hard but I enjoy it.”

  She smiled and the two of us started talking. It was nothing out of the ordinary. We just chatted about our Christmases and the resolutions we were making for the New Year, music we liked, and films we wanted to see. But as Danielle drifted away from the computer and we carried on talking, the words hardly seemed to matter. Joanna was beautiful, so beautiful, and easy to chat to: she laughed and made jokes, listened to what I said and asked me questions. It was unusual for me to find someone I could talk with so easily, and two hours slid by in a blur.

  “I have to go,” I said reluctantly when I realized that it was well past midnight.

  “But why?” Joanna asked. “Aren’t you enjoying talking?”

  I longed to tell her how much.

  “I’ve got an early start tomorrow,” I said, not wanting to say that my father needed to put me to bed because it was late, and he wanted to sleep.

  “Okay,” Joanna replied. “Shall we be Facebook friends so that we can talk some more?”

  “Yes. Let’s speak again soon.”

  We said goodbye and excitement buzzed inside me as I shut down the computer and took Kojak outside for his final run of the night. Joanna was so friendly. She seemed interested in me and obviously wanted to talk more.

  But then reality hit again. Just before Christmas I’d met a woman I’d liked very much and was pleased when she invited me to the theatre. Then she arrived with her boyfriend, and I felt like a particularly pathetic kind of dog that was being given a treat. Why was I letting myself get excited again now? It had been proven to me over and over again that I wasn’t the kind of man women wanted to love, and I’d been rejected too many times. If Joanna wanted friendship from me—just like every other woman I met—then I would have to content myself with that.

  As I went inside and got into bed, I made a promise to forget what had happened. Joanna was a world away from me, and it would stay that way. I was being foolish, wishing for something I’d bee
n shown time and again was impossible for me to have.

  Then an email arrived.

  “Hi Martin,” Joanna wrote. “I was waiting for a message from you but didn’t get one, so I thought I’d contact you instead. I enjoyed talking to you, so let me know if you want to chat some more.”

  What could I do? No man could resist such temptation.

  45 MEETING MICKEY?

  “I have something to ask you,” Joanna says as I look at her face on the screen.

  It is the middle of February, and we’ve been in constant contact since we met. For the first week or so we sent polite emails, edging our way forwards together like swimmers dipping their toes into the sea before deciding to dive in. But we soon forgot our caution and started talking every evening over the Internet. Each night was as easy as the first, and we once found ourselves chatting online as dawn broke before realizing there was still more to say.

  I’ve never known it could be like this with another person—so easy and simple—or that talking to a woman could feel as natural as it does with Joanna. I want to know everything about her, and words tumble out of us as we tell each other about our lives and what has happened in them—from tiny, insignificant details like the songs we love to the most important events of my life as a ghost boy and the death of Joanna’s father, whom she adored. It is as if there is nothing I can’t say because Joanna listens in a way I’ve never known before: she is interested, funny and sensitive, positive, inquiring, and a dreamer just like me. We talk about the tiny details of our days and our hopes for the future, we joke together and laugh, and talk more honestly about our innermost feelings than I’ve ever done before. There is no need to hide.